41 replies to this topic

[TeddyB]

Had a checkup today, 4.5 weeks after starting Gleevec treatment.

WBC at 5.4 (Down from 77 2.5 weeks ago)

Hemoglobin 12 (Up from 11,4 2.5 weeks ago)

Platlets normal

Spleen reduced in size, almost normal, was allowed to start exercising.

Happy about the results, Onc was very pleased as well.

Thanks guys for all the support so far, still a long way to go, but every victory counts

[pammartin]

Congrats on the great counts.  Although your journy continues, don't forget to celebrate the good news!  Toasting to your continued response!

Pam

[TeddyB]

Thank you Pam!

Had a glass of red wine to celebrate

[pammartin]

Wine, now that is intelligent, on the other hand I can be very intelligent. I have not visited Crown Royal for a long time, although I celebrated for you last evening, I fear it will once again be a long time before revisiting the Crown, I am finally feeling like I am human again.  Fifty years later and I still have not learned my lesson. 

[TeddyB]

Canadian Whisky?

I love Whisky, but havent dared try it after starting Gleevec

In time, i am pretty sure i will though, just need to get used to all of this CML stuff brewing around in my head, and of course the G

[pammartin]

Although it is a favorite of mine, I am fairly sure it will once again become a fond memory

[TeddyB]

Indeed

[Ray99]

Teddy,

  

      Congratulation on the good response.  I started my treatment shortly before you on Tasigna. 

      Glad to hear that you celebrate with a glass of wine.  I always enjoy wine and beer; but I did not get a clear picture whether it is harmful or not to enjoy them during the TKI treatment.  I asked my onc and he told me to enjoy it the same as before in moderation.  I would appreciate any comments on alcohol consumption in moderation while taking TKI.

[Antilogical]

My onc said alcohol was fine.  My only limitation right now is raw, rough-skinned fruits & veggies (like berries), which I am to avoid until my counts get back up in the normal range.  But the wine is fine!

[Ray99]

How about occasional sip of Scotch or Cognac?  My onc said it's OK too.  I am hesitate to indulge, yet.

[TeddyB]

I havent started down that road yet, but im sure i will sometime soon

I will keep it on the light side though, only 1 or 2 drinks, dont want to shock my liver, also i guess its best not to drink just after having taken Gleevec, i would wait a few hours.

I take mine with breakfast though (for now at least), so thats no problem for me.

[TeddyB]

Not 100% sure, but it might have something to do with the fact that G is not good to breathe in or get directly on the skin.

Maybe someone else has a better answer

[TeddyB]

Anyone experience weight issues on G?

Before DX, my normal weight was around 78kg, and now im down to 71kg, been there since DX about 1.5 months ago.

I am eating alot, 3-5 times a day, and i dont watch what i eat at the moment, i dont do much exercise yet, but i try to walk at least 30minutes pr day.

Im hoping to gain some weight, but so far havent been able to do so. Does the Gleevec take a lot of time for the body to get used to regarding weight?

[GerryL]

Hi TeddyB,

Not sure if it is the Gleevec - I've remained at the same weight since starting Gleevec, even though I watch what I eat and have increased my exercise routine. When I asked my doc he said it is probably the fluid retention playing a part. Others have found they have put on weight.

Stress is possibly the issue for you with your weights loss, if you're still eating the same amount of calories.

[Ray99]

TeddyB,

    I lost about 2.5kg the first week after starting Tasigna.  My Dr. thought it could be due to enlarged spleen that made me felt full and actually ate less.  He also suggested that it could be due to stress and anxiety.  I started eating high calorie food, like pasta and ice cream.  After two weeks, I gained back the lost weight and remain steady in weight.

   As GerryL suggested, it probably not the fault of TKI.

Ray

[Tedsey]

Dear Teddy,

Pre dx, I had lost around 9kg and couldn't gain any weight.  I looked like a skeleton and was questioned by doctors and family if I had an eating disorder (crazy, because that is why I sought help for 3 years trying to find out what was wrong with me---blame the victim, go figure...).  After dx, Gleevec, and a switch to another TKI, it took me about 2 years to gain back the weight I lost.  I think with the body fighting so hard to maintain homeostasis with the abundance of WBC and enlarged spleen (if I remember your case right), it is not easy to keep weight on.  After your body heals on the TKI, you should be able to gain weight.  Now I have to watch that I don't get fat!  Good luck and good health.

Tedsey

[LivingWellWithCML]

Hey,

I don't exactly know why, but I lost 26 pounds over the first 4.5 months of Gleevec 400mg and cannot put a pound back on.  I changed some aspects of my diet after diagnosis, but it's not like I was eating burgers every day before diagnosis either. . I am 6ft1in, so I am now a quite thin 152lb..almost my high school weight!.  I get comments all the time from folks (whoa man, you need to put some meat on them bones!), but I can't seem to do it.  I do exercise rigorously, which I am sure is a factor.  My theory is that G has induced some real metabolism change, and I appear to be very healthy since I am responding to treatment....so I don't worry about it anymore and just do some upper body weights to tone as best as I can.  As long as we don't continue to lose weight, I think that's the key.  Once I leveled off, I calmed down...I was definitely concerned over those first few months.

Hope that helps -

[TeddyB]

Thanks for sharing your weight experiences guys, it really helps a lot knowing its not unusual to be in my position.

Stress/anxiety might definitely be a factor as i am still quite stressed out. (Starting to cope a bit better now though)

Dan, your about the same size as me then, i am 6ft and 156-157lb. Speaking of burgers, i had burger for lunch and burger for dinner on Tuesday

Glad to hear most of you have put on weight again after some time, ill try not to worry so much about weight and see what happens once the body settles down.

Think ill have a big steak for dinner today, with a nice glass of red wine, that will give the body something to work with

[LivingWellWithCML]

Hey Teddy,

Yeah, we are about the same size!  One person on here reminded me that our height/weight ratio is in the normal range, so no reason to fret.   I didn't mention that - but I had some major anxiety over that first 4 - 5 months on G as well, so I'm sure that was a contributing factor.  And yes, a glass of red wine in the evening (I believe) is good for the mind, body, and the soul.  I've had 1 - 2 medium glasses of red wine nightly and it hasn't had a negative impact on my G response at all .... pretty thankful.  However, I did seriously reduce my red meat intake post-dx ... although I love a good steak, I've probably only had 3 over the first year of treatment.  Perhaps I need to take your lead, LOL

[TeddyB]

Wine is definitely good for the soul, at least when its only 1-2 glasses pr night

As for red meat, i have been eating everything and anything lately, my appetite has actually grown since starting Gleevec.

A regular day for me starts with 2 slices of bread with goats cheese, strawberry jam and Gleevec, then lunch around 12 or 1, either a baguette with ham and cheese or 2-3 slices of bread with ham and cheese, then dinner at around 5 witch is either fish, white meat or red meat (usualy with a big salad or cooked potatoes or rice), then evening meal wich is 2 slices of bread and a yogurt. I also try to sneak in some fruit from time to time, oh and some chocolate. I try to drink alot of water and sparkling water, but i also drink the occasional coca cola.

As for taking my lead on the steak, i say go for it